Carers, though they may look calm on the outside, carry a lot of baggage that they try to hide. Hit them on a bad day when they may be facing yet another assessment or worse a tribunal and anything can tip them over the edge. As I face yet another mountain to climb you would think after 30 years I would be used to tackling another problem, and although I am stronger, more determined, more experienced and yes probably louder, I find each battle gets harder as my daughter Jess, who has both learning and physical disabilities gets older, because each new issue/problem not only affects Jess but those around her, particularly her dad and me!
I came to realise about 5 years ago that my life will never be my own and as I get older the worry of what is going to happen to Jess is with me 24/7 and I know from talking to friends whether face to face or on social media; I am not alone. We all know that our top priority in our lives is making sure our loved ones are safe and secure for the future. We take the knocks, the one step forward and 10 back, the constant assessments that we are meant to drop everything to attend, the boxes to tick, but our children don’t fit into them but we are told if we don’t there will be no benefit. Then there is the one comment that has stuck with me when I asked “Who will look after Jess when I am no longer here?” answer “When it happens we will pick up the pieces!” Words failed me and that doesn’t happen very often. But all this takes its toll and believe me the feeling of wanting to find a dark corner to curl up in a ball and never come out of, quite often happens and at the moment this is how I feel. I feel I have to outlive Jess and though it is right for her to live independently I would give anything to have her safe with me but this would benefit nobody. Whilst it is imperative that Jess and people like her come first, over the years I have come to realise how little support and more importantly emotional support there is for families especially close members such as parents and siblings.
So, sitting in the co-production meeting listening to the proposals of what MacIntyre want to do to improve the situation is music to my ears. I consider being asked to be part of this team along with Jess an honour and very exciting because if MacIntyre can do this and change ways in which families are looked after it will not only benefit them but the lives of vulnerable people who need their families to be fit, healthy and happy to support them in getting the quality of life they deserve.
I could give you many examples of what has happened over the years, of what we have been through, battled with or when we just wanted to give up e.g. when social workers have run away from a meeting because they have never met anyone like Jess, fighting for more care when Jess lost the sight in her right eye, being asked if you feel guilty not living near your daughter or a phone call asking if her lifelong disabilities have improved? At the moment we are fighting another battle as Jess would like to move. As much as she loves her flat she gets very lonely at night and this has got worse now she is older and it has a knock on effect on me and her dad. A cluster home has been suggested so we put her name down, but unfortunately she missed out on the Redditch one. However there is one being built in Bromsgrove and after a lot of crying and talking Jess said she would move to Bromsgrove, a very big step for Jess! But she has to be assessed yet again for suitability and there are no guarantees she will get a place and I am not actually sure she really wants to leave Redditch. But what has really alarmed Jess is that she has been told that she will have to have the care provider who has taken on the home. Jess is desperate to keep MacIntyre and is entitled to choose her care as she receives direct payments. After 5 years Jess now trusts MacIntyre and has started going to GP’s and dentist appointments with them and this to us is so important. Last week I just wanted to run away and hide, I didn’t know which way to turn or who to go to as sometimes your own family are fed up with you going on about the constant fights and don’t want to hear you in tears down the phone. I wanted to call someone in MacIntyre but felt I was a nuisance, but eventually did and was so pleased I had as I am now back in fighting mode, sleeves rolled up ready for the next round!
So yes parents and family members come with a lot of baggage and this is something that needs to be remembered. So, if as a team we can move forward and create a network for families to fall back on (literally) whether for information, support but most important for me a listening ear it would be a big achievement I think for all concerned.
Parent to Jess who is supported by MacIntyre
Co-author of Jess and the Goth Fairy books